Lately I’ve been thinking about why I created the category on this site called Dominick and Rebekah. At the same time, I’ve been thinking about or feeling like lately I’ve been spending an enormous amount of my time focused on Lyra’s needs and neglecting the needs of Dominick and Rebekah. Have they noticed? I’m sure they have. A couple of friends and family members even questioned me about the time I’ve been spending on Lyra compared to my other two. How has it affected them? I have no clue, at least right at this moment. Apparently I’ve been too busy to notice, and that’s aRead More →

These are the kinds of things that Daddies teach their babies… You can never have too many videos of Lyra. : ) This is her showing off her new trick; and then later, just plain showing off. Here are the lyrics to the song she is attempting to sing. It is our special version of ‘Row, Row, Row Your Boat’ that we learned from Lyra’s teacher, Miss Kim. Row row row your boat Gently to the shore If you see a lion Don’t forget to roar…ROARRR! Row row row your boat Gently down the stream If you see an alligator Don’t forget to scream…AHHHH! ThisRead More →

Lyra’s hair has started looking rather dingy. I can think of no other word to describe it. YES, I do wash my child’s hair. I just don’t think the baby shampoo is going to cut it anymore. Her hair just has this slight yellowish/grayish tint to it lately. I know it’s not her hair gaining pigment, because its hair all over her head, not just hair closest to the roots. In fact the dingiest looking part of her hair is the hair in the middle and on the ends. It’s kinda gross. 😛 I’m going to have to research this a little more, but IRead More →

Although I haven’t been that vocal about it on this site, albinism awareness is something that is extremely important to me. One topic in particular that I have very strong opinions about is how albinism is portrayed on TV shows and in movies. I will educate everyone I know or ever meet in the hopes of making life a little easier for Lyra and other children with albinism. Some people argue that the treatment of albinism in movies and on tv is no different than any other condition or disability. That’s not true. There are some movies out there that inaccurately portray other conditions/disabilities, butRead More →

I was at my dentist’s office making a payment with Lyra a while back, and there was an older woman finishing up about the same time as us. She had been staring and making baby talk/saying Hi to Lyra for a few minutes. As we were walking out, me pushing Lyra in her stroller, the lady followed outside. Once outside I bent over to fix Lyra’s sun hat. The lady bent over to talk to Lyra and in her best baby-talk voice, said “What are you?” EXCUSE ME… At first I thought I MUST have misunderstood her, but then she said it again, “What areRead More →

Sometimes the only way for me to deal with things or to get through a situation is to add a little humor. And thats OK… You need too be able to laugh it off once in a while. It’s kind of therapeutic for me and sometimes keeps me from bursting into tears. For example, when Lyra got her outfit made out of UV protective material for her birthday, I said “Look, she got a HAZMAT suit” or when I say she is like a pinball when she walks around bumping into things. However I would have very likely become defensive if someone else would haveRead More →

    I found this beautiful story from a link on another parent’s website. Thank you Cassandra. It’s another way of looking at or describing what it’s like for parents who have a child who is different in some way. To me, it is also a reminder that you never know what God has planned for you. _________________________________________________________________ WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, toRead More →

My baby girl is on the cover of a magazine!!! I wrote an article for the latest issue of Albinism Insight, a quarterly magazine published by NOAH. I had included some pictures to go with the article, but her picture being on the cover was a complete surprise. We were all very excited when we saw it. The article is basically a condensed version of the “history” section of this site. I couldn’t come up with a title myself. The magazine editor, Kelsey Thompson, titled it, “Life with Lyra: A new mom reflects on her first year as the parent of a child with albinism.”Read More →

My daughter Rebekah is 11 years old. I have a unique and special relationship with her that different than my relationship with Dominick and Lyra. Part of this is because I was very young when I had her and in many ways we grew up together. Consequently, I am quite protective of her and cautious in my decision making with her. Another reason we have this close relationship is because we are so very much alike, in our behaviors, attitudes, and even looks. Sometimes its as if I’ve made a little clone of myself. This is frightening because I look back on mistakes I’ve madeRead More →

Dominick is 5 years old. Dominick is my sweet baby boy, definitely a mama’s boy. He is laid back and untroubled, witty and random. Until recently he hasn’t really asked questions related to Lyra’s albinism. When she was born, we talked to him about it, but not in great detail. He was 4, so he didn’t really understand what it all meant. He knows to help keep the sun out of Lyra’s eyes and that she has teachers come work with her at home and she doesn’t see as well as he does, but he’s never asked why. I’m sure everything has affected him andRead More →